The Waiting Game

Today we met with our neuro to talk about Oliver's recent weaning of meds and next steps with the diet and seizure treatment. We shared with him that February, March and April were kick ass months for us because of reduced seizure activity and that May and June have not been so great, mainly because of the increase in clusters since fully weaning Vigabatrin. Oliver had a 25 minute very intense cluster yesterday that stopped about 5 minutes after his rescue med was given at school. Scary and it really knocked him out for the rest of the evening :(

However, because the seizures haven't increased too much, the neuro believes there isn't any reason to medicate right now. If we had gone from 3 clusters per month to 20 clusters per month, we might consider adding a medication or going back on his previous Vigab dose. But since we went from 3 to 6...he still considers Oliver to be doing "very well" and doesn't think it's worth adding a med for a little bit of benefit when it would come with very big side effects. I tend to agree with him but still feel like a quitter for saying it's ok for Oliver to have seizures, as long as he doesn't have too many. Though we can all agree he's shown great alertness and awareness since coming off the medications and I wouldn't trade those smiles for anything!

Oliver was actually awake in his appt and in a good mood for the first half (the 2nd half he spent crying in his stroller while Jason pushed him around the waiting room). The doctor got to see all his new moves (he rolled both ways! he held his head up while lying on his tummy! he smiled! he laughed! he had more spontaneous movement in his arms and legs!).

Unfortunately our most recent EEG report was not ready and in the system waiting for him (we expected it would be as it usually takes a week and the EEG was a week and a day ago) , so now we wait to find out how much worse it looks compared to before when he was having fewer seizures....hopefully we'll find out very soon as it may change our decision to not medicate him at the moment.

Will post back when we know more!

June

We've had a lot going on in the past several weeks, hoping to figure out some answers for Oliver with his GI issues. After lots of phone calls and appts we finally got Oliver in for a gastric emptying study and determined he does have delayed gastric emptying. Basically the food sits in his stomach much longer than it should, and that is why he's never really hungry and also explains a lot of the reflux and GI pain he suffers. The full report is being sent to our GI doctor and then we'll find out next steps when we meet with him again.

Oliver also had an overnight 24 hour VEEG (Video EEG) this week. He did a great job but didn't have many of his staring spells while hooked up so I don't know that we'll actually know if those are seizures or not. He did have several of his small little random jerks and startles so it will be nice to see what types of seizures they are. He didn't have a big cluster while hooked up, which was expected because he never does...and because he was having a really good streak. Prior to today, his last big cluster was May 26th. Unfortunately, today the daycare called and said he was having a bad/long cluster and they were giving him Clonazepam to stop it. But this was his longest streak between big clusters since before he started the diet so that's good.

Oliver has been consistently rolling over just with his upper torso and always to his left side but it's a bit of progress. He also has been smiling a ton lately, which we're very grateful for. his bath chair arrived last night, woohoo! So we're excited to see if that helps him enjoy baths more. it will certainly make bath time easier on all of us.